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Ive Never Had Rashes! What was I thinking??!

Hey guys,
I know you guys are going to think Im nuts :roll: , but my husband and I have just had a major epiphany. All my life, I thought Ive had sensitive skin - really red across cheeks and nose (have spent a fortune on "anti-redness" creams for years), red and splotchy getting out of the shower, etc. And I absolutely love the sun, tanning etc. so I honestly have NEVER given a second thought to the dry circular patches (that feel like cuts almost) on my face, arms, hands, and legs - I thought they were just little patches of too much sun/dry skin. But I did think it was a little strange that they actually stung when you touched them.)
I have never given a second thought either to the small bumps that kind of look like pimples, but arent - all over my chest, shoulders. I thought they were little "sweat bumps" from being outside and sweating. I always thought that the heavy redness that you could still see, despite the tan -was just my skin. I thought I had uneven skin tone and/or blotchy type skin. I always thought that the small scabs all over my scalp that would come and go were from dry skin. Even my hairdresser thoguht they looked strange, and said they were hormones. And I wouldnt get one on one day, then another a couple days later. I either had a BUNCH of them or NONE - like a breakout or something

OK- after listening to all of you these past two weeks with regards to the sun, heat, sunblock, covering up, etc. I decided to take all your advice, and stay out of the sun. I did this so I wouldnt feel sick more than anything, as I didnt have a rash to worry about.
You guys, I cant believe my skin!! It is almost even toned! The redness is still there, but lighter. But the splotches, bumps, patches, etc - are not there. It looks like someone elses skin! :shock: Im not kidding. Now, Ive also been using sunless tanner, so I have color, but no splotchies! At least 10 people today made a comment. They couldnt exactly put their finger on it. Like "Umm...you just look...more rested? Like less..." as they put their hands towards their face, while they think of the right thing to say. (Y'know, saying - hey Lau, youre not all red and splotchy - wouldnt sound too nice) But its true!! And, for the most part, my symptoms have definatley decreased. Im a little sore and swollen as I walked to my meeting 2 blocks away - not direct sun but heat for sure, and fatigued from cleaning yesterday - but NOTHING like I was 2 weeks ago - not even close. I cannot believe that all this time, the sun has been causing me so many problems. ops: I never made the correlation, because I was ALWAYS sick and ALWAYS in the sun!!
Ive had a Breakthrough!! :lol: In addition to this, I was looking through an old "Daytimer" from a couple of years ago. I was being treated by my nuero only at the time, and I brought most every problem I had to him. In my daytimer, over the course of 1 1/2 years, I have written down at least THREE seperate times that I have broken out in a burning rash, and didnt know what it was. :shock: My nuero - without actually seeing it - assumed it was shingles, as I had such a high Varicella viral load at the time. One of them was so bad I had to go to see him, and he chalked it up to virus (he believed from the beginning that I had a post viral syndrome after that bad viral attack I had had) It was burning like hell that one, on my stomach, arms and legs. He gave me pain meds and anti viral meds. It eventually went away.
Then, after thinking about this stuff, my husband then remembered two OTHER rash attacks I had, and went to my GP for. BOTH TIMES they didnt know what it was, :? and sent me away with creams. THis was many years ago. You guys, Im not kidding or trying to sound like a hypochondriac or anything, but I think I have been getting rashes on and off for years, and no one ever thought to attribute them to lupus. Who knows what my blood work would have showed during those flares, huh? WOW, sometimes we dont see what were not looking for. This could be really huge for me. Ive always had the butterfly rash (which I regularly cover the heck out of when possible), but when asked by different docs "Have you had any type of rashes?" Ive always said, "NO"
Who knows, maybe a differnt outcome would have taken place had I known. BUT...it doesnt matter. We get what we need when GOD thinks were ready. Im a firm believer in that. But I WILL say this, these docs have me so paranoid and discouraged, :shock: that when these things started to come to mind, and make perfect sense, I literally started to ask myself, "OK, you have been on the forum alot this week. Are u sure your not lloking for something thats not there?" and that is absolutely not the case. My hubby would have been the first one to say that - but he completely concurred.
I really am going to take all your advice and keep a log with daily symptoms/sun exposure/foods/meds - everything. Thanks for letting me share - I hope you all dont think Im nuts, or someone who's "grasping at anything" to convince people shes sick. See how paranoid I am because of all the doctors? :cry: Oh well, I know its not bull and thats all that matters, I guess. Again, thanks for listening - have a wonderful Saturday evening everyone...
Love and friendship-
lauri
PS - I hear fireworks - its Flag Day!! Yeah!! :shock:

For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

It was interesting reading this post...I have similar things...I have just been taking a look at the redness, bunps and rashes in nether regions as well. I have gotten to hate the sun. I get so ill just being near it. We went to Disney World as a family a month ago and I am still very ill....
...but I digress...Plaquenil has helped some of these bunps but not all on my face.

I hope to get to know you better in time,

Karen

I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

Lauri;
As they say, "With Knowledge Comes Power!" Now, you have the knowledge and you have the power to control those issues that have, for years, been causing you rashes and pain.
Avoiding the sun has made a difference in the way you look and the way that you feel! I am so happy to hear that you are happy to know :lol: and I'm happy to hear that you look and feel better; that a small change in your routine has made a big difference in your health. As we say here, with lifestyle changes, we can manage our Lupus and live a relatively normal life.
Kudos to you, keep up the good work and I hope that you find more ways to make your life easier with this disease!
We are always here for you, whenever you need us!

Hi Karen -
I have read a lot of your old posts - its nice to formally meet you. Well, as I said - yesterday, I did go to my meeting down the street by way of walking. It was not too sunny out, so I stupidly didnt protect myself. Sooo, this morning, I slept until noon (I felt bad as it was Fathers Day and I was still sleeping ops: , but my hubby is cool, he didnt mind 8) . I got together the cards and little presents for him from my kids, and that was it! I wanted to go back to sleep, but Ive just been laying in bed all day. I fell back asleep for a couple of hours, and now its bedtime! Im not sure if its from being outside yesterday, but it sure seems like it. I havent been this tired since I began my meds and started watching the sun exposure. Im really weak, achy (not bad pain like usual, but achy), and my face doesnt look so good anymore. :cry: I am still floored by this whole sun thing. I dont think I ever gave it serious thought, because I was convinced by doctors I didnt have lupus, so I never even experimented NOT being in the sun, you know?
Honestly, I still have some doubts. I mean, gosh, as far as the criteria goes, theres no question there. Other symptomology, I have alot of that as well. The treatment for lupus makes me feel better. BUT....its still the negative ANA thing thats got me still questioning it. I think Im going to put the question out there for all you experts about the negative ANA thing. I just still have my doubts....
Thanks for posting, I hope you start to feel better soon!
Lauri

For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

One of them was so bad I had to go to see him, and he chalked it up to virus (he believed from the beginning that I had a post viral syndrome after that bad viral attack I had had) It was burning like hell that one, on my stomach, arms and legs

your not grasping for anything.. Im going through getting diagnosed right now and this exact thing happened to me too.. i just got it today infact! I actually have to sit infront of my fan if I put cover up on that's how bad mine burns my face.
I also used to be into tanning years ago.. and I too thought I just had a blotchy skin type and it made me mad because Ive always wanted an even skin tone!

Yes, doctors make me paranoid about my symptoms too. Keep your head high you're not making this up and that's the funny thing about Lupus.. these symptoms do not have to be present at the time you're getting diagnosed. The checklist I had to fill out asked if I have EVER experienced bla bla bla

That is so funny because my husband and I were just talking about my redness and rashes. I went K-Mart yesterday and my face got so red and starting burning like it was on fire then came a headache and the feeling like I needed to sit down or I would fall down. I then realized it was the lights in the store. I am 53 have Lupus Just came up positive in my bloodwork last summer but I have had it for many years I can go back to my childhood when I had hives and patches they had no idea what it was. The joint pain started up in 1990 but I do remember some in my late twenties too. This is so funny that I have been to sooooo many doctors throughout the years trying to find out what was wrong with me. Sometimes I feel like a big baby over all this but damn it sucks LOL

Hi there! I am so glad that you found help here. Everyone here has helped me so much through my journey it warms my heart to hear things like that from others.

I never understood how the light could affect me until I was ill for one week and stayed home from work. All my rashes and so much of my fatigue were completely gone! It isn't that simple for me now but I know I get so much worse in the sun and/or florescent lighting. When I go to the grocery store I have to use 50 protection sunscreen, a hat, long sleeves, etc. As Susie said, now that you know what is happening you know how to deal with it!

I am so glad you are here and I am also glad that we were able to help!

MariSuccess is not final, failure is not fatal: it is the courage to continue that counts.